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Just diagnosed: now asking Chemo first or surgery first?

christylb's picture
christylb
Posts: 2
Joined: Feb 2010

My fiance was just diagnosed with Stage Iv colon cancer that has spread to his liver. We have met with one doctor who is recommending 3-6 months of chemo before doing surgery. I am still learning these terms but the chemo he is recommending is the one that cause problems with neuropathy because the they are afraid that the tumor in his colon will be affected with the other chemo that cause more diaherra which will cause bleeding in his colon. We are meeting with the second doctor (surgeon) to see if he would recommend removing the tumor in the colon first. Isn't it hard to do surgery while you are on chemo? The docs comments were if he starts to bleed then we would do surgery on his colon right away. My fiance's is also a video photographer and makes a living using a camera, in addition to being a passionate cook. I have heard the damage on the nerve endings with this chemo can be permanent which would cause financial losses as well as passionate losses from not being able to do the things he loves.

Has anyone faced these decisions and what would you recommend? From his diagnosis, Chemo and surgery are both absolutes just trying to figure out the order of both. We know that he will be very sick from the chemo but thinking that at least the other type is just temporary and he will be able to continue to work when he can.

JR's picture
JR
Posts: 140
Joined: May 2009

I don't feel that I,m qualified to give advise but I will tell you what I did. I am also stage 4 with mets to liver and lungs. It was surgery first for me. It may be that if the lungs aren't involved that chemo first is recommended. Get as many opinions as you need to feel comfortable with the decision. I would recommend a cancer center recommended by the National Cancer Institute. Good Luck.

John

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

First, I'm sorry to hear of your fiancé's diagnosis. The chemo sound like it's FOLFOX possibly. The oxyplatin it the drug that can cause neuropathy or numbness in the hands and feet and a sensitivity to cold. The amount if affects people varies. I had it moderate to severe and 5 1/2 years after the fact, I sill have very mild numbness in my hands and feet. I play guitar (not for a living thank God) but I am very passionate about it and if I were never able to play again, it would be beyond rough for me. I am also one who cooks, not for a living but to stay alive. (don't tell anyone but my wife is not a great cook...) I enjoy cooking, it's (mostly) relaxing and it's fun to create something that's delicious too.

I had a choice when I was first DX (diagnosed) 6 years ago with stage IV colon cancer with mets to my liver and lungs. The dr who found it wanted me to have surgery first, then try to buy me a little time. Thankfully I went to Sloan Kettering and got a second opinion. In my case, the colon was not too severely affected, my liver had multiple tumors in it and one in particular was surrounding the hepatic artery, the main blood supply to the liver. I was put on the FOLFOX along with avastin which starves tumors of blood and therefore shrinks them. The chemo was very successful and after 6 months or so, they operated on me and removed 60-70% of my liver, a section of my colon, my gallbladder and a few lymph nodes. They did stop chemo for 4-6 weeks before then did any surgery, that is standard operating procedure.

Please have him get the second opinion (and a third is need be) but I would strongly suggest doing chemo first if the colon issue isn't too time critical, then do surgery. I just found that when the body is stronger, you can take the chemo better. Knock that cancer down to a more manageable size, then get rid of it. I had a friend who had a very similar case as mine but he opted for surgery first.
Like I said, I had a friend....

Everyone is different Christy with different circumstances, tolerances to drugs, and attitudes. Get as many opinions as you guys can and go with what you feel is your best option.

Hang in there, they often get rid of it all after the chemo but sometimes they do not and more chemo is needed.
I'm stage IV and living (well) with cancer for over 6 years.
BEST wishes for you both,
-phil

mom_2_3
Posts: 965
Joined: Nov 2008

John and Phil have given you good advice. I just wanted to comment that typically with Stage IV disease chemotherapy is first as it can help arrest the growth of the liver mets. Is your fiancé operable in the liver? Or is the surgical option available right now just for the colon? I know it seems like you just want to get rid of whatever cancer you can right now through surgery but hemo beforehand is a good way to gauge his response to treatment. If there are no mets to shrink then you won't know if it is a good chemotherapy for him. Also, if he has surgery and then there are healing complications (which can be common) then he will have to wait until mostly healed until chemotherapy can start (which you do not want to happen).

You can read member's history by clicking on the username to the left. I am also Stage IV with liver mets. Phil and I go to the same doctor at MSK. I had liver/colon surgery last Feb and am currently NED.

Sorry you have to be here but you will find a very friendly and supportive group here.

Amy

PS I did Folfox as well and had no neuropathy so it does not happen to everyone. You might want to read about magnesium infusions with the Oxali as I have read that that can mitigate the Oxali neuropathy. Ask your doctor about it.

tiny one
Posts: 467
Joined: Jan 2009

I had stage 3 colon cancer. I had surgery first and then treatment. I gained back all the feeling in my hands fairly fast. I still have a slight numbness in my toes, the neuropathy is almost gone now. Never assume that he will be very ill from chemo, he might not be. Get some other opinions and then make your decision.

coloCan
Posts: 1956
Joined: Oct 2009

I have stage 3 and started with chemo(pill and infusion via port in chest) with radiation, then surgery to remove tumor and other growths and now more chemo to be safe. Many have gone thru similar regimen but each tumor is somewhat different too as well as nature and location of mets (cancer spread beyond colon).If time permits, try to get a second opinion. In any event, be aware that with a competent medical team and a fighting, positive attitude (as diffuicult as that may be at times)that you can live with and gradually defeat the BEAST. People on this site more experienced/knowledgeable will be of great assistance as well, as they were/are to most of us here. Most side effects of your treatment can be dealt with (medication,etc)and no matter how bad they may get if it kills the cancer or slows it down, i think its worth it!!!!! wIshing you the best of results in your decision ands don't be afraid to post questions/comments/experiences on this site(site is a lifesaver)......steve

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

I had chemo first and them we while waiting the six weeks (to get the chemo out) to have liver surgery, my tumor in my rectum grew and then totally obstructed and my intestine bust causein near death and emergency surgery which resulted in a colostomy bag, Then after i healed another 6 weeks later they started radiation, with oral chemo drug (novaris mispelled). this worked really good both tumors shrunk to barely nothing, i had to wait another 6 weeks and then they did a scan and another colonoscopy and decided to remove my main tumor in the rectum nd take down the colostomy and replace t with a ileostomy for 6 to 8 weeks to heal. On march 24 they will take down my ileostomy and i will have to learn to use the bathroom again, (train my bowels).,

I have not addressed the liver mets and i have had not had chemo again since the beginining.
I feel that I should have had radiation first and addressed the rectum tumor first, I don't know for sure but i think the original chemo, did not do any good, .

I did have some neuropathy from the chemo, but it is no big deal, it is all but gone now,

With any corse of treatment stage 4 is not easy, there will be times of lose of income and his passion may be diminished just from the exhaustion of this cancer, He'll need your incouragement and exceptance that life as you know it is about to change and how that effects you all is up to you.

My advice if he has a tumor in the rectum, i would address that first, and if this is his case i woulld ask about radiation.

Also if you have any questions about anything be specific about whats going on and the members of this board will gladly let you know all about their experiences and this really helps. Doctors for the most part know what they are doing and are good but they don't have cancer, we can only let you know how that is.
prepare yourself for a wild ride.

Live, Laugh, Play
Winnie

John23's picture
John23
Posts: 2140
Joined: Jan 2007

There should be a law requiring second and third opinions.

Chemotherapy is a life-changing ordeal, and every bit as invasive
as a major surgery, often leaving scars that may never heal.

A doctor is a human being, just like you or me, and a doctor's
opinion is only an opinion, just as you or I may have.

No life-changing event should be accepted without hearing
from other, unassociated professionals. You should make
some appointments with other "out of area", or at least
"out of system" specialists, and get their independent opinion
regarding the course of action.

Weigh all options,sometimes the "cure" is worse than the "illness".

Good luck!

John

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

One more thing Christy, he will likely have the option to get a port installed for administering chemo. He should DEFINITELY consider getting it put in. It's a minor operation and it will save/spare his veins from the caustic side effects of the chemo. I could not imagine not having my port, it's the best thing I did as far as prepping for chemo. Some may disagree with me, you will find many opinions here but I think the majority of the folks would agree that the post is the way to go.
-phil

geotina's picture
geotina
Posts: 2120
Joined: Oct 2009

Welcome to the Board. Anyway to address your questions, my husband's tumor was in the transverse colon, was quite large, and they operated on it first with chemo being started about 4 weeks later. George is Stage IV with lots of mets to the liver and lungs. Where the tumor is located fits into the scheme of things. Rectal cancer is treated a little different than colon cancer. Where is your fiance's tumor located? How severe are the mets to the liver? George's chemo was the Folfox and Avastin. Since he was transverse colon, there was no radiation. George had an excellent response to the chemo. As far as working, George continued to work full time the whole time and still continues to do so. He missed about 1 1/2 days of work every 2 weeks. Many times he would go to work, work a half day, take off and get his chemo, come home and say "whats to eat". Some people get the chemo all in one day, one shot, George's onc does it over 2 days thus the taking off 1 and 1/2 days for chemo infusion. Fatigue was his biggest enemy. He did have neuropathy, cold sensation, metal taste but did not experience nausea. The anti nausea med at chemo infusion worked very well. Some people do not work during chemo but you will find that many, many do, you will just have to wait and see how your fiance responds. Phil is right, ge the port.

If you have time fill out your about me page so we know more about you. Take care and don't hesitate to ask anything. Take care - Tina

christylb's picture
christylb
Posts: 2
Joined: Feb 2010

Thank you so much for your comments. He was scheduled to get a port before the chemo but I found it quite wrong in that we had yet to have a consult with the doctor (except via phone about results and in the hospital when they found the tumor in the colon and the liver). I had problems with the doctor just assuming that we were to begin chemo without ever discussing what kind, expectations, etc. Thank goodness that has changed. I feel helpless in fighting the cancer but I do know how I can help with the doctors, scheduling, and support. I think that getting this second opinion will make us feel more powerful in all the decisions that we need to make.

The doctor said that after the chemo then they would go in and remove part of the liver and the tumor in the colon. We do not, fortunately have to worry about the rectum, from where the tumor is located.

We are still figuring this all out. Part of me never wants to understand "the lingo" of cancer but I know that unfortunately, I will be able to discuss everything in detail sooner. It is a reality that I need to face now to be equipped to handle things during his care. The funny/ ironic thing is that we are "running off" to get married next weekend. At our age you always find the reasons not to but now it just seems right. I figured together is a better way to fight this.

Although I have broken down in front of him....do you find yourself crying, loosing sleep, but still feeling that you have to be strong in front of your spouse?

lmchils57's picture
lmchils57
Posts: 60
Joined: Feb 2010

I am so there with you about not wanting to have to learn all the lingo and other stuff about cancer but unfortunately we do. My son who is 31 was just diagnosed two weeks ago, has it really only been two weeks sometimes it feels like ages ago, and so we too are just in the first steps of learning stuff. His is also stage IV, and the tumor in his colon is large but not causing any obstructions at this point, they did not say anything about the rectum so I don't think we have that to worry about right now either, but it is in the liver and in both lopes which made him a lesser candidate for a resection unless they can get some positive results from the treatments. That being the case he is going through chemo with Avastin first, then they will figure out the next step. He just finished his first treatment and had few side effects at this time, as a matter of fact for some reason the pain that he was experiencing seems to have gotten quite a lot better and he is now eating along with more energy. He did have nausea with the chemo but they have him on two anti-nausea meds and we are also using ginger tea. I think before his next treament next week we are going to pick up the ginger capsules and try what many have suggested and that is to start those three days prior and continue them for three days after, hopefully that will help with the nausea more.
Another thing lots of people including the drs have told us positive attitude is key to surviving this, I know that is hard and there are times I want to scream that it unfair for my 31 yr old son who has 3 beautiful sons of his own is having to go through this. It was my dad that had colon cancer so one thing that tends to go through my mind is that it should be me not my son, but of course that gets me nowhere so I have to accept it. Have I borke down in front of him, not really since the first day of the diagnoses. Yes I have lost sleep and I am a bit more moody. I find I have less patience with people in general and work on that daily, I have always had a lot patience with customers at work but so many times when they are being crabby I just want to say get over yourself there are far more important things then whatever their gripes is. But when I think that I try to think, you know I don't know what they may have going on in their lives that is causing them to be that cranky too, it helps not completely but it does. Of course as a mom I feel I have to be strong for him, for his brothers, for his dad, and for his boys, we ahve to play with kid gloves when talking to my mom about it as she is 89 and not in the best of health. Though sometimes I think we miscalculate how strong she really is and she might take it better then the rest of us, but she has already outlived 2 husbands and one daughter, I am sure the idea of possibly outliving a grandchild would be really hard on her, I know how bad she took it when my sister died. I truely believe getting on here and asking questions and reading success stories helps me a lot with coping and I hope you wil find that also.
Hang in there and remember if you need questions answered or jsut need to vent this is a good place for it. There is also a caregivers discussion board and I plan on using that if I get to feeling too overwhelmed.

Linda

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hey Christy

Nice to meet you! I'm thrilled for you that you guys are tying the knot very soon - that's a good move for you guys and all of these trials and tribulations will certainly make your marriage a strong bond. Sometimes, it takes a major life change to do something, doesn't it? Such is the way of life it seems - but I wanted to wish you both all the best in your nuptuials and congratulations on being there for each other - may your life be filled with joy as you walk together in your journey :)

Having to be strong in front of your spouse?
As a guy, I can only that YES, I always portray an image of strength for my wife, even if at different times, I have not felt like it. She always seems to do much better when she sees me standing tall. Now, I've had my private moments of course, in the car on the way to or from work, or a song that sends me down an emotional path or something. But, I've never let on like it was the end or that the end was coming. One time I tried to talk openly and she could just not handle it well - so I thought I'll just tell her it's ok - do what I gotta' do - and if I need a moment, I find it.

A couple of times she has cried in front of me, and it made me sad, that I was hurting her with my diagnosis or how the treatments were whippin' me at the time. I just tried to hold her and comfort her and tell her nothing was going to happen to me. That seemed to make it better.

You guys do what you need to do - my 1st doctor told her "Treat him the same way you have always treated him, don't give him a break because he's got Cancer." And as nature would have it, she did just that, LOL :) All kidding aside, she was wonderful and took on so much to help me/us...I would not be here without her.

It's a tough thing, but you will emerge from this stronger and more determined than ever - again, I wish you all the luck and happiness that this world has to offer.

-Craig

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Christy,

I believe that most oncologists/surgeons would choose to do chemo first if the cancer has already spread to other organs or places in the body from the original site. An exception to this would be if the tumor in the colon were causing a blockage, an extreme amount of pain, or other major problems where it needed to be removed right away. I think if they said they want to do chemo first, that would be because they're thinking that tumors in the liver are more serious. When I was diagnosed w/ rectal cancer w/ tumors also in the liver and lungs, they decided to do the chemo first. The idea was they needed to get the cancer under control more first. There is usually a waiting period of six weeks before and six weeks after surgery where no chemo is given. So, if they did the surgery on the colon tumor first, that would 12 weeks of no chemo & then the liver tumor(s) might grow during that time.
When I had chemo, my tumors really responded to it. I was able to get to the point where they focused on my original rectal tumor. The chemo I had at first did shrink it some, but it was still there. The next thing they did (after six months of Folfox chemo with Avastin) was to have chemo/radiation on the rectal tumor. The idea was to shrink and prepare the area for colorectal surgery. My rectal tumor responded very, very well to the radiation- in fact, I had what they call a complete response- it went away completely, so I never did have the colorectal surgery.

You take care & I'm glad that you're getting a second opinion on this, but I wouldn't take too long before your boyfriend gets started on the chemo.

If he has questions about taking the chemo (esp. about the oxaliplatin- the one that causes the neuropathy, tingling, etc), then we're all ready to share what we know here.

Hugs,
Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Christy,

I think every situation is unique, but in my case I have not had surgery yet for either the cancer in the colon or the 4 spots on my liver. The "orignal" plan for me (last June) was to have 5 weeks of radiation + chemo (folfox) for my colon cancer, then ~ 6 weeks, scanning, then hopefully surgery. Well, after those scans they determined that although the 2 colorectal tumours had shrunk, I had 4 liver mets (until then they were not sure). Surgery was off, at least for now + I was devastated. Everyone I read about seemed to have had surgery 1st, or after a 5 week chemo +/or radiation treatment. However, my surgeon's told me that if I had surgery then, the liver spots would grow because I would not be able to have chemo for a while before/during/after surgery. They began a new chemo combo for me (folfiri + avastin); my 2 colorectal tumours are not detectable + the liver mets have shrunk. Yesterday the oncologist said they can see calcification of the liver on the scan, indicating the tumours are dying. I now think this was the right decision for me + I am on a good path. My surgeon told me on I needed to be "patient" but this is sometimes very hard. A second opinion is always a good idea, as others have said. Good luck!

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Doug_B's picture
Doug_B
Posts: 27
Joined: Feb 2010

Hi Christy,

I agree with Phil. Originally I opted to use a PICC line as the method to administer the drugs. I stayed fairly active during treatments and the line eventually started coming out of my arm. A third of the way through chemo one of the stitches broke and a second one few days later. My nurse told me to hold my breath and out it came. The rest of treatments were administered by needle which left my veins looking a dark brown and hard to the touch. They eventually went back to normal after 6 to 7 months from the end of treatment.

The PICC line has to be flushed two times a day and there has to be a second person helping unless you are a contortionist. The dressing has to be changed once a week and the site of insertion (on the backside of the upper arm) has to be covered with plastic before showering.

Besides all the attention it required it is a constant reminder that there is something wrong.
In short, it was a pain in the ***. Don't make the same mistake I did, go with the port. God bless and remember cancer is NOT a death sentence. There are over 10,000,000 survivors in the USA today. They can't all be wrong, Doug

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